I’m sitting here in front of my computer with about ten things on my mind to write about. I have to make a choice between posting a random mish mash of these thoughts or focusing on one topic and coming back to the others another time. The problem is that whenever I do that, I don’t come back to the other stuff. To spare you from reading a novel, though, I’ll stick to one topic…but to hold myself accountable to the other things, here’ s an abbreviated list of some of the things on my mind today:
- Whitney Houston
- Facebook observations
- Religious Freedom
They are all timely, but I’ve decided to focus on Valentine’s Day.
If you’ve known me longer than 365 days, you know that I am not a fan of Valentine’s Day. It’s one of those “holidays” that people either love or hate or love to hate. Recently, the Oatmeal posted this comic (warning: colorful language) and I promised not to rant about Valentine’s Day this year. If you’re curious about my position, you can read my Valentine’s Day – Bah Humbug post here. And, then this morning, I asked my 12 year old if he would be my Valentine and he said “I don’t celebrate” and went on to parrot all of the things I have said about Valentine’s Day over the years. My first thought was “Oh no…I’ve ruined him”. My second thought was “Oh no….my future daughter in law is going to hate me”. Now, she might hate me anyway, but I decided it won’t be about this issue. I very seriously told him that unless he is lucky enough to find a partner who lets him off the hook at Valentine’s Day, he needs to suck it up. Sometimes we do things just to make other people happy.
Truth be told, Valentine’s Day is important to me too. But, for a different reason. It marks the culmination of Congenital Heart Defect Awareness Week. CHD Awareness Week is an annual campaign designed to help educate the public about Congenital Heart Defects. The movement was founded in Feb 2000, just a few months after my own son was born with a Congential Heart Defect. I have had the priviledge of watching the movement grow into an international coalition of families, individuals, non-profit organizations, support groups, and health professionals who are dedicated to increasing public awareness of Congenital Heart Defects and Childhood Heart Disease.
The fact is that congenital heart defects are common. In fact, it’s considered by the CDC to be the most common birth defect, affecting nearly 40,000 births in the US every year. Worldwide, it is a leading cause of birth-defect related deaths. Despite all this, a relatively small amount of funding is currently available for parent/patient educational services, research, and support. Even more disturbing is that most states do not require newborn screening for some of the most critical heart defects. The thing is that many times, heart defects will not show signs or symptoms right away. Without newborn screening and parent education, babies are at a much greater risk of death or disability from their condition than children who are diagnosed within the first 24-48 hours of birth. My own son’s story is a perfect example of how early detection and palliative treatment can save lives. If he had not been pre-mature, he very likely could have been sent home and we would have had no idea that he had a life threatening condition.
Pulse Oximetry Screening is a simple, non-invasive way to test a the oxygen levels in a baby’s blood. While this screening does not replace a complete physical examiniation and it does not detect all heart defects, it can alert doctors to a potential problem and the baby can get the additional testing he or she needs.
I am proud to live in a State that has already passed legislation for newborn screening for congenital heart defects. But, if you don’t live in Maryland, New Jersey or Indiana, it’s possible that babies in your state are not getting this simple test. If you are pregnant or know somebody who is or might become pregnant, you should care about this. Since we all probably fall into one of those three categories, we all should care about this.
If you want more information on congenital heart defects or CHD Awareness Week, visit the Congenital Heart Information Network. These folks have been working hard for years to raise awareness and their website is full of information on CHDs and ways that you can get involved.
CHDs are not something that happen to other people’s kids or people you don’t know. If you are reading this post you know somebody with a CHD.
And that’s why Valentine’s Day is important to me. Well, that and less complaining, more sexy rumpus….
Jake has Tetralogy of Fallot. This picture was taken when he was 3 and full of energy. It wasn’t always that way, though. You can read his story by clicking on the picture.